Activity Report 2013 Headquarters: C/ Muntaner, 383 2º

Activity Report 2013 Headquarters: C/ Muntaner, 383 2º. 08021 Barcelona Tel. 93 414 55 66 [email protected]

Regarding any matter related to this report you can contact the communication department by e-mail at [email protected] The report can also be downmoaded from: www.fcarreras.org

Publisher: Josep Carreras Leukemia Foundation. Production: www.blueprocess.es Design: Inès Bacardit Layout and typesetting: Laia Freixes Photography: Photographic archives of the Josep Carreras Leukemia Foundation. English version: duual.com Printing: Marbet Servicios Creativos

This report is printed on 50% recycled paper with FSC certification produced from sustainable woods of controlled origin.

2 Contents

Corporate information 6 Our history 7 Governing bodies 8 Our team 11 Organizational culture and philosophy 12 International presence 13 Financial information 14

The Foundation’s activities 16 Scientific research 18 REDMO 22 Teaching activities 24 Attention to the patient 25

The support of society 26 Communication and e-marketing 27 Our members 29 Occasional donors 30 Benefit events 31 Legacies 33 Supporting companies 34

3 Je me prenais à te maudire, à te détester, à me dire: pourquoi faut-il que le destin l’ait mise là sur mon chemin?*

“La fleur que tu m’avais jetée”, Carmen, Georges Bizet

*And I found myself cursing you, hating you, and saying to myself: Why did destiny want you to cross my path? 4 Dear friends,

Leukemia crossed my path twenty six years ago. At that time I was at the peak of my career and it was a very difficult blow to accept. With the help of my family and friends, and that of an excellent medical team, I managed to overcome the disease. But leukemia had turned my life around by 360º.

Out of gratitude to society and the medical community I decided to embark on a new course of life: the creation of an international foundation aimed exclusively at fighting leukemia. With the help of leading scientists, professionals in other fields and from the world of business, the Josep Carreras Foundation came into being in 1988. During this year 2013 we have been celebrating our 25th anniversary.

It is a great satisfaction for me to be able to share the advances that have been made during this time with you. We have made it possible to perform around 6,000 hematopoietic precursor transplants (bone marrow, peripheral blood and umbilical cord blood), we have invested more than €110 million in research and we have given assistance to more than 24,000 families. Even so, today, one in four children and half the adult patients do not succeed in overcoming the disease. We are aware that there is still a long way to go and that is why we carry on working every day to achieve our aim: improve the quality of life of people suffering from leukemia and make the disease, one day, 100% curable.

We were very keen to celebrate this 25th anniversary in a different way and to share it with the rest of society because, without the support of our partners and friends our road would be much more difficult. So we filmed a documentary called La Fleur in which we wanted to express the countless moving and unforgettable moments we have lived through over the last 25 years. Leukemia changed my life for ever, just as happened to Don José, who sings the aria La fleur que tu me avais jetéein Bizet’s opera Carmen. This is the image we have used for this documentary, it is a metaphor for the whims of destiny, for challenges, but also for hope and opportunity.

Without your help we would never have been able to celebrate 25 years of struggle and progress in the fight against leukemia. Thank you for your heartfelt support.

With my kindest regards,

Josep Carreras President of the Josep Carreras Foundation

5 Corporate Information

6 25th anniversary of the Josep Carreras Leukemia Foundation. Corporate information

A historic moment for the Founda- tion: the laying of the foundation stone for the new building of the Josep Carreras Leukemia Research Institute on the ICO/Germans Trias i Our Pujol campus in Badalona. The number of families to have been accommodated in the history Foundation’s reception apartments reaches 100. It was July 1987. Josep Carreras was in Paris re- cording for a film version ofLa Bohème by Giacomo Puccini, directed by Luigi Comencini, when he be- The Foundation celebrates the figure of 10 million bone marrow gan to feel unwell and went to hospital. Forty-eight donors throughout the world in hours latter the blow came: it was leukemia. It was a an event at the Hospital Clínic in terrible diagnosis which, furthermore, came at a mo- Barcelona. ment when both from the profesional and personal points of view his life was in its apogee.

Together with a great team of scientists and business The Foundation brings the number people and with the support of his family, in 1988 he of reception apartments in Barcelo- na to five. created the Josep Carreras International Foundation to contribute to finding a definitive cure for leukemia. “I began this project out of pure gratitude. When I The Foundation’s REDMO program became ill, society threw itself in behind me. I want- reaches 1,000 compatible donors ed to return these demonstrations of affection both located for patients awaiting a to the public at large and to science.” transplant.

Concert to mark the Foundation’s 10th anniversary at the Fountains of Montjuïc in Barcelona before an audience of 60,000 people.

Creation of the Josep Carreras Foundation in Germany and the first Josep Carreras Benefit Gala for the Foundation on the German TV sta- tion ARD

First extraction of bone marrow from a Spanish donor for a patient abroad (Australia). 2012

Creation of the registry of bone- marrow donors (REDMO).

Creation of the Josep Carreras Foun- dation in the USA and Switzerland.

1998

Creation of the Josep Carreras In- ternational Leukemia Foundation. Corporate information

Governing Bodies Executive Board The Board of Trustees is the controlling body of the Foundation and its purpose is the fulfilment of the foundational aims as well as to ensure the good management of the Foundation’s assets.

President Vice president Treasurer Mr. Josep Carreras Prof. Evarist Feliu Mr. Albert Carreras

Trustees Dr. C. Dean Buckner Mr. Ramiro Giménez* Mr. Lluís Bassat Mr. Marcel Pascual* Mr. Arcadi Calzada Dr. Rainer Storb Mr. Albert Carreras Pérez* Mr. Joaquim Folch-Rusiñol Dr. Joan Uriach Dr. Álvaro Urbano Dr. Jordi Sierra*

(*) Members of the Delegate Committee

8 International Scientific Committee The committee’s function is to supervise the implementation and quality of scientific work, promote research and collaboration, advise the Foundation on the strategies to be adopted and evaluate the projects that are carried out.

President Prof. Ciril Rozman Farreras Valentí School of Hematology, Hospital Clínic i Provincial, Barcelona

Members Dr. C. Dean Buckner Seattle, USA

Prof. Dieter Hoelzer Frankfurt, Germany

Prof. Hans-Jochem Kolb Munich, Germany Trustees Dr. C. Dean Buckner Prof. Álvaro Urbano Mr. Ramiro Giménez* Director Icmho, Hospital Clínic Mr. Lluís Bassat i Provincial, Barcelona Mr. Marcel Pascual* Mr. Arcadi Calzada Dr. Robert Sackstein Dr. Rainer Storb Harvard Institute of Medicine, Boston, USA Mr. Albert Carreras Pérez* Mr. Joaquim Folch-Rusiñol Dr. Rainer Storb Dr. Joan Uriach Fred Hutchinson Cancer Research Center, Seattle, Dr. Álvaro Urbano USA Dr. Jordi Sierra* Dr. Eliane Gluckman Dept of Haematology, Hôpital de Saint-Louis. Paris, France

Dr. Jeffrey Molldrem MD University of Texas, MD Anderson Cancer Center Houston, USA

Prof. Dr. Catherine Nissen-Druey Basel, Switzerland

9 Dear friends,

All of us who form part of the Foundation’s team look back with quiet satisfaction at how we have grown, both as a team and as a Foundation, over the last 25 years. But this satisfaction is tinged with regret when we remember those with whom we shared so much, but who are no longer with us. Please allow me, on the occasion of this anniversary, to remember here three people who have departed but who, each in their own way, have had a very important role in shaping the way the Foundation has evolved and how it is today.

Professor Ricardo Castillo was the first of our losses. He was a highly esteemed man in both clinical and academic circles who put his wisdom and kindness at the service of our cause. The regard with which he was held by so many of his medical colleagues was a personal asset which Ricardo brought to the Foundation as a gift. He did not need a computer, e-mail or any other kind of digital device. With his rigour, his meticulous handwriting, his stacks of folders and his kindly conversation he opened doors and convinced people. Forgive me for my very personal mention of him as the person who first inspired me to join the Foundation. I have very warm memories of him.

Professor Edward Donall Thomas, together with his wife Dottie, generously accompanied Mr. Josep Carreras from the moment the Foundation was created. Alongside it he created a sister foundation in Seattle and, well into his eighties, he travelled indomitably to Barcelona every year to participate in our Board meetings, and to inspire and evaluate our programmes and projects. Not only was he a Nobel Laureate in 1990 for developing bone marrow transplants, the head of the medical team that attended to our Foundation’s president and a teacher to all the hematologists in the world, he was also remarkable and even more admirable for his modesty and easy manner. It’s true that we have our doubts about the size of the salmon he claimed to have fished in Alaska, but it was always a pleasure to hear him talk, always profoundly, but also full of vitality and good humour and always allowing himself to be guided in almost everything by his inseparable Dottie.

Finally, another distinguished angler, our Dr. Albert Grañena, whose demise is more recent. One of his last contributions, and one we are all very happy about, was his singular appearance, so to speak, in our documentary film La Fleur. It is not to be missed. Albert was the way he appears on the screen: agile, uninhibited, loquacious, ingenious. His personality and his uninterrupted relations with the Fred Hutchinson Cancer Research Center, and very particularly with another great doctor and Trustee of our Foundation, Dr. Clarence Dean Buckner, meant that he was always ahead of his time. Amongst other initiatives, we owe to him the fact that the Foundation chose, from the very early days, to opt for the donation and storage of units of umbilical cord blood. His disciples at the Sant Pau Research Foundation are also working in a very promising direction which he had backed and which our Foundation supports in his memory.

Many are the patients who have benefited from the work of these three people, all of whom were exceptional. The team here at the Foundation have all gained from their character, commitment and warmth. Our efforts, amongst other aims, are directed towards being their worthy successors in continuing their work in the pursuit of our cause.

Antoni Garcia Prat Administrator of the Josep Carreras Foundation

10 Corporate information

Our Team Technical team The Josep Carreras Foundation has a structure of 26 people who cover the various disciplines the organization needs to carry on its activities.

Administration Mr. Antoni Garcia Prat

Scientific secretariat Prof. Evarist Feliu

General secretariat Anna Boix

REDMO Director of REDMO: Dr. Enric Carreras Coordinator of REDMO: Núria Marieges Technical Coordination and Umbilical Cord Blood Office: Cristina Fusté Donor Department: Cristina Bueno, Núria Giménez and Cecilia Montesinos Patient Department: Mavi Díaz, Ana Montesinos, Ana Pertusa and Clara Rosés Umbilical Cord Blood Department: Mariam Pérez and Montse Rebagliato Accounts: Carolina Salillas and Raissa Dardet

Marketing Members, benefit events and legacies: Albertina Grau Administration of members and donations: Anna Grau Corporate alliances: Belén Roldán Management and quality: Anna Giner Press, communication and e-marketing: Alexandra Carpentier de Changy and Brenda Roqué

Reception apartments Esther Soto

IT Head of IT: Mario Gran

Attention to the public Maite Santiago

11 Organizational Culture and philosophy

Our mission Our vision Our principles We are working so that one day, We want to build up the support The following fundamental prin- leukemia will be a curable disease of society and prioritize efforts in ciples are at the heart of the work for all patients in all cases. scientific research, consolidating of the Josep Carreras Leukemia our current lines of work. Foundation:

Undertaking Independence Warm, friendly relations We are a foundation governed with patients and donors As an organization we are com- exclusively by independent indi- Anyone who comes to our Foun- mitted to the aims for which it viduals and financed by private dation with a question or to col- was founded. funds. laborate with us deserves to be warmly received and to be well Rigor and transparency Protection of the good informed, particularly the patients We promise to society that we will name of our President and their families who are hoping act professionally, respect trans- The Foundation benefits from the for our help and understanding. parency and information about reputation of Mr. Josep Carreras For this reason, we always try to the purpose for which the funds and everything we do is perceived be grateful and professional in received are used, and to provide as pertaining to Mr. Carreras. We our response and our actions. ourselves with everything required have a responsibility to ensure to ensure good administration of our president’s name is well used. them. We are requesting the help of society and so the generous Scientific research support we receive must be very We want to collaborate so that well administered and the way it scientific research advances is used must be explained. more swiftly than it would with only public resources funding projects in this field.

12 Corporate information

International Presence

In 2013, international projection has continued to be one of the strategies to be consolidated.

United States Switzerland Germany Josep Carreras Leukaemia Fondation José Carreras José Carreras Foundation Contre la leucémie Leukämie-Stiftung US Friends of the José Fondation José Carreras pour Deutsche José Carreras Carreras International la lutte contre la leucémie, Leukämie Stiftung e.V. Leukemia Foundation Genève.

Definition of projects: Definition of projects: Definition of projects: The Josep Carreras Founda- The Swiss Josep Carreras Thanks to the more than 100 tion in the United States funds Foundation maintains the pro- million euros raised in the a clinical research chair at the gram of high-resolution typing course of 19 editions of the Fred Hutchinson Center. This for the units of umbilical cord televised Gala against leu- chair is named the E. Don- blood collected by the Swiss kemia, the Josep Carreras nall Thomas/Josep Carreras registry and which are made Foundation in Germany has chair and it is funded with over available to any patient in the funded 975 projects, 500 of $1,000,000. The post is offered world. them for grants and assistance to members of the clinical re- for research, 60 for the creation search division of the institu- and enlargement of health-care tion who agree to spend 75% and research and more than of their time on research. Since 350 being for social matters 2009, the beneficiary has been and help for associations of Dr. Hans-Peter Kiem, who has patients and relatives. made important advances in cellular therapy.

13 Corporate information

Financial Information

Application of resources 2013 Total: 7,097,000€

Administration 10,25%

Awareness-raising REDMO 19,29% 50,47%

Reception apartments 1,35% Research 18,64%

Where resources came from Others 3% REDMO fees 7% Financial income 16%

Activities of Mr. Carreras and others 24%

Donations 51%

14 15 The Foundation’s Activities 16 Dear friends,

This year, 2013, the Josep Carreras Foundation (FIJC) has been celebrating its 25th anniversary. Over the course of all these years the Foundation has been working on such fundamental tasks as the Bone Marrow Donors Registry (REDMO) and the promotion of, and support for, research in the fight against leukemia and other malignant blood diseases, as well as contributing towards the creation of hospital infrastructures, mostly bone marrow transplant units and umbilical cord blood banks in various places around the world, and providing a wide array of social services to patients and their families. On account of its scientific patronage the Josep Carreras Foundation has recently received the National Research/Scientific Patronage Prize awarded annually by the Government of Catalonia.

With regard to the Josep Carreras Research Institute (IJC), we can say that it continues to grow according to plan.

Dr. Pablo Menéndez joined the University of Barcelona Hospital Clínic Campus as the Catalan Institute for Research and Advanced Studies (ICREA) Senior and Research Director, together with his research team. Also, the Institute’s facilities at the research laboratory at the University of Barcelona (UB) Faculty of Medicine have been built and a contribution has been made to improving the facilities at the UB which are also used by IJC staff.

Dr. Francesc Solé joined the Catalan Institute for Oncology/Germans Trias i Pujol Campus (ICO/GTiP) as head of the cytogenetics platform, head myelodysplastic syndrome researcher and the Campus Research Director. The construction of the new building is about to start at phase 0 and the project for phase 1 has commenced. Work is also taking place on the functional project for the third campus, or Sant Pau Campus. Work groups have been established at all three campuses between the clinical heads and the researchers.

The pace of investment by the Josep Carreras International Foundation (FIJC) for the construction of laboratories and to provide the respective campuses with equipment continues intensely, as does the procurement of public and private competitive funds by IJC researchers, and funds from donations by the FIJC.

Scientific production in 2013 in the form of research work can be considered very good and the Institute has recently passed the first Research Centres of Catalonia (CERCA) evaluation.

In 2014 the search will continue for the appointment of a Research Director at the Sant Pau Campus and for a Scientific Director for the Institute. At the same time a strategic plan for the next four years needs to be drawn up and collaboration agreements signed with hospital institutions and other research institutes and universities. Additionally, work with the External Scientific Committee, presided by professor Lucio Luzzatto, needs tobe strengthened.

We will continue to work with great enthusiasm to create an Institute devoted entirely to research into leukemia and other malignant blood diseases, an Institute that that will be an example, both at home and abroad, with the conviction that research carried out today will contribute to an improvement in the rates of survival of patients suffering from these diseases and that it will contribute to finding a cure in the not-too-distant future.

Thank you very much.

Prof. Evarist Feliu

Vice-president and Scientific Director of the Josep Carreras Foundation President of the Delegate Committee of the Josep Carreras Leukemia Research Institute

17 The Foundation’s activities

Scientific research

Grants

In order to fulfil its main aim, which is to find a cure for the project entitled, “Inhibition of the Ubiquitin Li- for leukemia, the Josep Carreras Foundation has gase Fbw7 in Chronic Myeloid Leukemia”. The grant scientific investigation at the very core of all its ac- is for €50,000 per year for a period of three years tivities. (2014-2016).

Thanks to the increase in financial resources deriving Since 1999, the European Hematology Association from partners and collaborators, therapeutic advan- (EHA) has been awarding a two-year grant for young ces are being made every day, and this guarantees European hematologists sponsored by the Josep the continuity of the projects. Carreras Leukemia Foundation. The grant for 2013 and 2014 was awarded to Dr. Luca Mazzarella of the Every year the Josep Carreras Foundation awards European Institute of Oncology/State University (Mi- the International E.D. Thomas Grant, which enables lan, Italy), who will receive funding of €50,000 each projects to be funded for up to three years and is year for the project entitled, “Obesity-associated offered to candidates who have received their docto- FLT3 mutations in Acute Promyelocytic Leukemia: ral degrees more than three years ago and less than investigating a novel paradigm for the cancer pro- ten. moting effect of obesity”.

In 2013 this grant was awarded to Dr. Beatriz Aranda Orgilles, of New York University School of Medicine,

18 JOSEP CARRERAS LEUKEMIA RESEARCH INSTITUTE

In 2010, after more than 25 years’ work trying to The IJC carries out its activities in collaboration with improve the quality of patients’ lives and, above other specialised teams so that resources can be all, trying to find a definitive cure for leukemia, the shared and the capacity for response increased. Josep Carreras Foundation decided, together with To this end, the plans are for the development and the Generalitat de Catalunya (government of Cata- equipping of 3 scientific campuses over the coming lonia), to launch a historic and incomparable project: years. a research centre focussed exclusively on leukemia and other malignant blood diseases, it being one of few such centres that exist in the world. And so the Josep Carreras Leukemia Research Institute (IJC) came into being.

University of Located in the research facilities at the Hospital Clínic Barcelona Hospital in Barcelona and the University of Barcelona (UB) Fa- Clínic Campus culty of Medicine.

Catalan Institute for Located in the environs of the Germans Trias i Pujol Oncology/Germans University Hospital, the Autonomous University of Trias i Pujol Campus Barcelona (UAB) Germans Trias i Pujol Teaching Unit, and the Institute for Predictive and Personalised Can- cer Medicine (IMPPC) Sant Pau Campus Located within the health care facilities of the Hospital de la Santa Creu i Sant Pau and the UAB Sant Pau Teaching Unit.

How the CAMPUSes are developing:

Clínic/UB Campus genomics have also been refur- Foundation will also provide the In 2013, after the signing of a sci- bished to ensure their optimum research Campus with the nec- entific collaboration agreement use. These facilities are valued essary equipment. Invitations to with the University of Barcelona at €870,000 and the scientific tender for the construction work (UB), the Josep Carreras Foun- equipment at €1,690,000. The are to be issued in 2013. dation provided funds for the IJC and the Josep Carreras Foun- construction and equipping of dation estimate that it will take 5 Sant Pau Campus the IJC University of Barcelona years for the scientific Campus to The Sant Pau Campus will be Hospital Clínic Campus located be fully operational (2013-2017). equipped with research labora- in the facilities of the UB Faculty tories of the hospital’s Transplant of Medicine. ICO/Germans Trias i Pujol Unit Hematology Service as well Campus as with the laboratories of the In order to establish the Catalan UAB Faculty of Medicine Sant This Campus has a 250 square Institute for Oncology/Germans Pau Research Foundation. metre floor of the Faculty of Med- Trias i Pujol Campus, Badalona icine which has been equipped Town Council ceded land adja- with a number of cutting edge cent to the hospital in which the scientific laboratories. Some of Josep Carreras Foundation will the facilities shared with the UB build a new building covering for microscopy, proteomics and some 4,000 square metres. The

19 The Foundation’s activities

On the project for the construction and equipping of the JOSEP CARRERAS Leukemia Research Institute

Liquidation by the Josep Carreras Foundation as of 31/12/2013 €2,108,497.49 Committed as of 31/12/2013 for the construction of the ICO/Germans Trias i Pujol Campus €2,198,725 Committed as of 31/12/2013 to equip the Hospital Clínic-UB Campus € All these1,493,494.84 resources form part of the 14 million euros that the Josep Carreras Leukemia Foundation will devote to buildings and equipment for the Hospital Clínic-UB Campus, the ICO/Germans Trias i Pujol Campus and the Sant Pau Campus.

Lines of Research

Current lines of research Vertical lines of research 1. Acute leukemias 2. Chronic lymphoproliferative syndromes 3. Chronic mieloproliferative neoplasias 4. Monoclonal gammapathies 5. Myelodysplastic syndromes

Horizontal lines of research 6. Malignant blood diseases and coagulation 7. Complications associated with therapeutic procedures 8. Transplant of hematopoietic progenitors and cellular therapy 9. Epidemiological research 10. Clinical research

20 Dear friends,

We think the most outstanding news there is to share with all our friends, partners, donors, patients and families in this new Josep Carreras Foundation Annual Activity Report is the launch and promising initial results of the National Plan for the Promotion of Bone Marrow Donation because, having been fully operational for only a few months, it has managed to double the number of donors there were in 2012. Traditionally, the number of volunteer donors registered in our country was lower than that of neighbouring countries with economic resources similar to ours. In 2007 there were more than 12 million volunteer donors in the world but very few units of umbilical cord blood, a new therapeutic alternative at that time and a particularly efficacious one in pediatric cases. A concerted effort was therefore made in our country to promote the donation of umbilical cord blood, conferring priority on it through the launch of the National Plan for the Promotion of Um- bilical Cord Blood Donation. Subsequent years have proved us right and at the present time we are the second country in the world in terms of the number of units of cryopreserved umbilical cord blood and more than 2,000 patients around the world have been able to receive a transplant thanks to units of cord blood donated by Spa- nish couples. These good results led to the design, funding and launch by the Ministry of Health, under the direction of the National Transplant Organisation with the collaboration of all the Autonomous Communities and the Josep Carreras Foundation, of the National Plan for the Promotion of Bone Marrow Donation towards the end of 2012. The aim of the Plan was to double the number of registered donors in 4 years to bring the number to 200,000 donors, a figure comparable to that of nearby countries. Achieving a certain number of donors was not, howe- ver, the only aim of the Plan. It is also very important to try and improve the immunological diversity of the world inventory of donors. Many Spaniards have forebears with ethnicities that are different from the Caucasian (which accounts for most registered donors) and they can consequently provide HLA phenotypes that can not be found in the international registers. To put it another way, the inclusion of these donors increases the possibility of finding a donor compatible with patients that have common roots. For other patients the increase in the number of Spanish donors will not significantly increase the probability of finding a compatible donor since there are already 23 million donors, mostly of Caucasian origin, but it does mean that the transplant process will be made easier due to the increased accessibility and proximity of local donors, and it will significantly reduce the cost of the procedure. It was not easy to begin with because we have all had to adapt to the new distribution of responsibilities set out in the Plan. Thus, the health authorities of each Autonomous Community, to whom current legislation attributes exclusive responsibility for promotion, information, registration and typing of donors within their community, have had to adapt their structures in order to have sufficient donor referral centres. The Josep Carreras Foundation has set up a call centre to provide information about the National Plan; it has agreed to take charge of the information and registration of donors from the Autonomous Communities who so request, and has made a very considerable financial investment to provide all the Autonomous Communities with the necessary IT resources for the registration of donors. Similarly, the Foundation has defrayed the costs of creating a Web site, for all those Autonomous Communities who have so requested, which makes it possible for donors to register from home. Finally, three typing centres in the country have accepted the implementation of centralised typing, some- thing that reduces costs considerably and which makes it possible to carry out a more complete HLA typing for new donors, which in turn benefits patients on the waiting lists and means that Spanish donors’ efforts are fully rewarded. The first three months of 2013 were taken up with all these questions but as time went by we could see the progress being made and the improvements taking place in all the donor centres and now we can say, without a doubt, that the Plan is achieving its aims: 25,828 new donors have registered with REDMO and four thousand more are pending the results of HLA typing for definitive registration. On account of all this we are convinced that we will, over the next three years, far exceed the aims we have set. Furthermore, in just one year 43 Spa- nish patients have received progenitors from a compatriot when, in 2012, there were only 13, evidence indeed that we are meeting our targets.

Dr. Enric Carreras Medical Director of REDMO

21 Visual guide to bone- The Foundation’s activities marrow donation: www.fcarreras.org

REDMO

The purpose of REDMO Aims achieved in 2013

Very often, the only chance of a cure for many Total number of donors of bone types of leukemia and other malignant blood marrow as of 31 December diseases is a transplant of bone marrow, pe- 2013. 132,335 ripheral blood or umbilical cord blood. Un- fortunately, only 1 in 4 patients have a com- New donors recruited to patible donor in their family. All others have REDMO in 2013. to resort to a voluntary donor. Since 1991, 25,828 the Josep Carreras Leukemia Foundation Total number of units of umbili- has administered the Registry of Bone Mar- cal cord blood stored in Spain ros Donors (REDMO), through an agreement as of 31 December 2013. 58,848 with the National Health System.

Number of volunteer bone-marrow donors in Spain (1994–2014)

150000

120000

90000

60000

30000

0 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

“Life has surprises and opportunities in store, but rarely does it provide the opportunity, with a little of your time, to give a chance of life to another person. That is why, after being so many years on the register of donors, when I got a call from the Josep Carreras Foundation last summer, I could scarcely believe they were giving me this opportunity.” Carlos Pastor, bone marrow donor. 22 In 2013, 43 people donated bone marrow or peripheral blood in Spain for Spanish patients and 20 for patients abroad. Furthermore, 77 units of Spanish umbilical cord blood were used on Spanish patients and 243 were sent for patients in other countries.

Searches for donors of HEMATOPOieTIC REDMO’s activity in 2013 PROGENITOrS

REDMO is interconnected with the international net- Searches for donors of bone marrow, peripheral blood work, and so for each search it can access the more and/or umbilical cord blood carried out: 859 than 23 million voluntary donors and the more than 600,000 units of umbilical cord blood available any- Number of compatible donors found for patients in where in the world. our country: • First donor located: 585 • Ideal donors located: 982

Patients for whom REDMO has found 1 or more donors since 1992, for Spanish patients: 6,257

Distribution of donor searches by diagnosis

Enf. Cong. 6% LLA Linfomas 22% 19%

SMD Enf. Cong.: Congenital diseases 17% LLA: Acute lymphoblastic leukemia LMA LMA: Acute myeloid leukemia LMC 34% 3% LMC: Chronic myeloid leukemia SMD: Myelodysplastic syndromes Lymphomas

Numbers of searches for unrelated donors for Spanish patients (1992-2013)

1000

800 SCU (n=61),

600 SP/MO + SCU (n=489)

SP/MO (n=309) 400

200

0 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

Transplants of HEMATOPOieTIC progenitors from unrelated donors (2013/TOTAL)

Transplants of hematopoietic progenitors coordinated by REDMO throughout the world: 761/6,044 Transplants for Spanish patients with cells from bone marrow: 81/1,209 Transplants for Spanish patients with cells from peripheral blood: 301/1,798 Transplants for Spanish patients with cells from umbilical cord blood: 101/2,935

23 The Foundation’s activities

Teaching Activities The management of excellence is a pillar for the With its interests mainly focused on increasing its development of the Josep Carreras Foundation and employees’ knowledge, capabilities and quality of the activities of all its employees every day. service, the Foundation has implemented vsrious courses and continuing training processes during the year 2013.

Hours of traiing for employees

Courses held for employees

The Foundation also spreads knowledge and experi- ence regarding bone-marrow donation by means of lectures, talks and round-table discussions both in companies and in schools.

Talks given in schools

24 Care for the patient Reception apartments

The Josep Carreras Foundation provides homes to the hospital for the period their treatment apartments for patients with limited financial lasts, thus contributing to their well-being and that resources who must travel a long way from their of their family members.

Foundation Patients accommodated Average number of days’ Average age of patients reception during 2013 stay accommodated apartments

Provenance of patients who have used our reception apartments from 1994 to 2013 Burgos Vizcaya Asturias Guipúzcoa Pontevedra Navarra Huesca Zaragoza Girona Orense Lleida León Barcelona Tarragona Menorca Castellón Mallorca Badajoz Teruel

Albacete We have also helped families from Andorra, Gran Canaria Murcia Argentina, Morocco, Almería Mexico, Paraguay, Peru, Tenerife Jaén Romania and Russia. Cadiz Malaga * Medical advice

The Josep Carreras Foundation also provides a free online service with information about the disease for whoever needs it. In the course of 2013, Dr. Enric Carreras, the Foundation’s medical director, dealt with 1,714 consultations.

25 The support of society 26 *Event to mark the 25th anniversary of the Josep Carreras Foundation in the Liceu opera house. Photo: Antoni Bofill Communication and E-Marketing

Campaigns Leukemia week, June 2013. 210 patients with leukemia and other malignant blood diseases took to the streets to mark Leukemia Week (21- 28 June) and to announce this message to society: ‘You don’t know how strong you are until life puts you to the test. Smile and enjoy life - it’s marvellous. LOVE LIFE!’.

There were patients in 16 Autonomous Communities and 32 Spanish provinces. The aim was to raise funds via text messages for a line of research at the Josep Carreras Leukemia Research Institute devoted entirely to the complications and side effects that can be caused by treatment. With the €50,000 raised we have funded a line of research devoted to studying respiratory problems deriving from treatment.

25 years fighting leukemia, September 2013. To mark the 25th anniversary of the Josep Carreras Foundation, we announced our annual awareness-raising campaign on 19 September. The aim of the campaign was to share the enormous progress that has been made over the last 25 years and the challenges for the future with society. To mark the anniversary we premiered the documentary film La Fleur. Josep Carreras y la lucha contra la leucemia, directed by Xavier Bosch, at the Gran Teatre del Liceu in Barcelona. This documentary can be viewed online at www.noleucemia.com.

The Other Lottery, December 2013. At Christmas time we launched a campaign with the slogan “The Other Lottery” with the aim of raising people’s awareness about the need to help in the efforts being made to eradi- cate a disease that is more common than generally believed. The message was very clear: You are 2,000 times more likely to be diagnosed with leukemia than you are to win the Christmas lottery. The campaign had a great impact that was echoed online.

*Event to mark the 25th anniversary of the Josep Carreras Foundation in the Liceu opera house. 27 Photo: Antoni Bofill The support of society

Website data Social networks 2011 2012 2013 In 2013 the Foundation’s website www.fcarreras. We also maintain a strong presence in the social net- org received 837,521 visits. On it, we have published works, following the main trends in communication 26 notices with information about the organization’s where public participation grows day by day. activities.

Our blog: www.fundacionjosepcarreras.blogspot.com received 58,008 visits in 2013.

2011 2012 2013 2011 2012 2013 Videos uploaded in 2013: 15

Number of plays 2013: 131,450 10,097,293 69,338 643 658 517 47,541 6,633,851 28,213 1,641,674

2011 2012 2013 2011 2012 2013 2011 2012 2013 Page fans Notices published Impact

New followers 2013: 1,579

Total followers 2013: 4,183

Tweets sent 2013: 170 2011 2012 2013 2011 2012 2013

2011 2012 2013 Our members

Thanks to people’s goodwill, the number of members of the Foundation grows every year, strengthening the need for its existence and guaran- teeing the future of the Foundation and of the projects and efforts of a large number of people devoted to finding a cure for leukemia.

Number of new members per year (1995–2013)

50.000

47.164

Distribution of members by sex

30% men 12,873 new members in 2013 339 members raised their annual 70% women contributions 47,164 members in total

29 The support of society

Occasional donors There are also many people who make entirely voluntary donations from time to time in the course of the year.

851Occasional donors in 2013 / Total8,693 of occasional donors since 1995

Number of new occasional donors per year (1995-2013)

10000

8000

6000

4000

2000

0 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

30 Benefit events Every year many individuals and organizations support the Foundation through their entirely voluntary contributions to fund-raising events. € 53Benefit events held = Financial47,755.32 contribution received in 2013

The following people who have organized benefit events for the Foundation deserve special mention: Patricia Agüeros, Matilde Amor Martín, Íñigo Bedia, Marco Borromeo, Miguel Calvo Rivera, José Antonio Caño, Nasko Cristina, Carmen M° Cubero, Noelia Galera, Josefa Garay, Vanessa González,David Fernández Gutiérrez, Marisa Guirado, Alberto Hernández Pérez, Oliver Herrero, Ara Huerta, Piedad Martín, Miguel Martínez Souto, Virginia Martínez, Esther Mercader, Juan Manuel Montero, Susana Matoses, Sergio Montilla, Patricia Montis Carrasco, Macarena Morales, Anabel Ochoa, Eva Pastrana, Fernando Payá, Daniel Rodríguez, Domingo Rodríguez, Javier Rodríguez, Assumpció Rovira, Estefanía Saguino Morales, M° José Sala, Núria Sánchez, Virginia Sánchez, Francisco Javier Santamaría, Albert Sanz, José Antonio Trujillo, Beatriz Valer, Guillem Vallejo, David Vallès Vallès, Vanesa Velasco and Javier Villarta Aguilera

Many thanks to all of them for their dedication and solidarity.

31 The support of society

These are the benefit events held in 2013 that are particularly outstanding because of their social value, the number of people they attracted or the sum raised.

Supportive athletes More and more people are deciding to take up a sporting challenge for a good cause. That is the case with Alfonso Rojas, Pab- lo Sáez and Rodrigo Urbina, who collected funds by taking part in an Iron Man event. Specifically, Alfonso took on the Ironman challenge in Lanzarote and raised €6,000, and Pablo and Rodrigo swam, pedalled and ran the half Ironman in Corrales de Buelna (Cantabria) raising over €3,000 between them.

In memory of a great fighter In Tagle (Cantabria) the first Lucía Chusa Blanco Memorial Walk was held. More than 500 people, including friends, family, school- mates and neighbours in general, joined in that day to raise awareness amongst the public of leukemia in general and of bone marrow transplants in particular. Together, they raised more than €3,500 which were donated entirely to the Josep Carreras Foun- dation.

Benefit gala against leukemia Alejandro Hérnandez, a leukemia patient, organized a benefit gala for Carnival in Castillo de Tegueste (Tenerife). It was a resounding success and succeeeded in raising €2,300 which have been donated for the battle against leukemia.

Benefit golf tournament In June the 2nd Benefit Golf Tournement for the Josep Carreras Foundation at the Baviera golf club in Malaga was held. The or- ganizers were Marisa Guirado, who collaborates with the Founda- tion, and the general manager of Baviera Golf, Mr. Ignacio Iturbe Escolano, who closed the course to the public for the whole day of the tournament. All the funds raised, €2,623.26, were donated to the Josep Carreras Foundation.

Benefit supper against leukemia Marco Borromeo organised the third Benefit Supper Against Leu- kemia and Cancer. The supper was a great success; Michelin- starred chefs from the Tarragona region were present and the event raised €2,303.52.

32 Legacies

A major part of the income the Foundation recives each year comes from legacies made with the good will of many individuals and families.

As the benficiary, the Foundation administers these legacies with a sigle intent: to ensure research into leukemia

For all of us who are closely involved in the organization’s efforts, it is very moving to be able to state that in 2013 and thanks to the people who have left all or part of their worldly goods to the Josep Carreras Leukemia Foundation in their wills, we have received over €900,000.

33 The support of society

Supporting Companies We wish to give our thanks to all the companies that have joined in with our cause. Their collaboration is an alliance of shared values and a commitment to solidarity, and it enables us to give our patients better prospects for the future.

Companies who financed our awareness campaign in 2013:

Supporting comanies:

The following companies have worked with the Foundation in various ways: financial aid, recruitment campaigns, solidarity programs involving their customers and users, amongst others.

B&W Group, Bonpreu/Esclat, Brandbuzz, CET Auditores, Fundación La Caixa, Fundación Real Dreams/Mi- granodearena, Hewlett Packard, Invest Farma, Johnson Controls GWS, La Colección Gráfica, Laboratoris Esteve, Mango, Oracle, RACC and Ralph Lauren.

Many companies have collaborated by providing their products or services free of charge.

25 TELEVISIÓ, Activa FM, Agència Catalana de Notícies, Ajuntament de Barcelona, Alooha Retail, Atrapalo. com, Bahía Sur Radio, Cadena Pirenaica, Cadena SER Coruña, Callao Digital, Can 10 FM, Canal 1 Mar Menor Torre Pacheco, Canal Blau, Canal Català, Canal Extremadura, Canal Metropol, Canal Reus TV, Canarias 7, Carat España, Castilla La Mancha Televisión, Clear Channel, COPE Marbella, Diari Ara, Diari de Girona, Diari de Sabadell, Diari de Tarragona, Diari Vila Web, Dunas FM, EL CORREO (Bilbao), El Correo de Andalucía, El Correo Gallego, El Mundo (Ed. Valladolid y Castilla y León), EL MUNDO.ES y EXPANSIÓN.COM, El Plural, EsRadio, Europa FM - Gipuzkoa FM (Publi Irratia), Factory FM, Fundación Atresmedia, Fusión Radio, Gas Natural Fenosa, Gimage, Guerrilla de Medios, Hibbu Connect, In-Store Media, iPad Mac Today, Iwall, JOY FM, Kiss FM, La Voz de Almería, Llosa FM, Marbet/Würth, Masque TV, Mataró Ràdio, Me Gustas FM Málaga, Metropolitana, Mola TV, Neo Advertising, NH Hoteles, Onda Fuenlabrada, Onda Jerez, Publico, Publiespaña, Radio Albolote, Radio Barcelona SER, Radio Bilbao SER, Radio Dance, Radio Generación, Radio Ibiza, Ra- dio Jaen SER, Radio L’Escala, Radio Marina (Blanes), Radio Martos, Ràdio RM, Radio Rociana, Ràdio Rubí, Radio Sió Agramunt, Radio Sobrarbe, Ràdio Teletaxi, Ràdio Tortosa, Radio UA1, Radiotelevisió Valenciana, Radiotelevisión del Principado de Asturias, Reus Digital, Revista UnBreak, Social Media (Vitónica), Sol FM, Sonae Sierra, Tele Taxi TV, Televisió de Catalunya, Televisión Canaria, Tropical FM, TV Costa Brava, TV El Vendrell, TV Madrid and Voz populi.

Ageements signed with Movistar, Orange and Vodafone have enabled us to raise funds from their customers through the SMS number 28027, and the Foundation received the whole of the €1.20 paid by customers for each message.

34 The associate company plan in 2013 The Associate Company Plan is for those companies that decide to associate themselves with our values and aims, establishing a long- term commitment to the battle against leukemia.

Associates of Associate Companies Honor

Alifarma Ayudas Dinámicas Aluminios Secades Celgene Bande à Part Enagás Consum Cooperativa Fundación Júngel Sanjuán Engel & Vöelkers Sant Just Fluidra Frutos Secos Ibiza Fundición y Sistemas Avanzados Gedesco VIP Associates Harry Brokers House Standing Ingecal Ingenieros Emetres Alzamora Packaging Internaco Bunge Ibérica Jocs i festes Checkpoint Systems España Conservas el Navarrico Hijo de Vicente Navarro Pastor Magnesitas Navarras Kobal Soluciones Mon Pirineu Manelam Ontecnia Media Networks Nacex Pinos del Raso The Kitchen is Close Soñando Organización Viajes Vitogás España

35 Don’t miss our www.noleucemia.orgdocumentary

36 37

39 Our aim is to make leukemia 100% curable one day.

Muntaner, 383 2º 08021 Barcelona Tel. 93 414 55 66

[email protected] www.fcarreras.org